Inflammatory Myofibroblastic tumor in 9 year old - 1290937

Hi Joann and welcome to Grace. I can't say how sorry I am to know about your grandson. We don't have much information on the disease past the mention of ALK treatments such as crizotinib though I've found some hopeful information on IMT on the National Health Institutes website including the following, "In general, inflammatory myofibroblastic tumors (IMTs) follow a benign course with a favorable outcome after they are surgically removed. In some cases, they can be invasive, recur locally, or spread (metastasize).[7] A metastatic IMT has a poorer prognosis and can cause death.[3] An IMT can also be indolent, with prolonged survival despite multiple recurrences. Local recurrence rates of 15% to 37%, and distant metastasis rates of up to 11%, have been reported.[3]

"Rearrangements of genetic material involving the ALK gene are present in the tumor in some affected people (known as being ALK-positive). Being ALK-positive may be associated with a more favorable prognosis. One study found that a higher percentage of patients with localized disease were ALK-positive (about 60%) compared to those with multicentric (having 2 or more separate growths) IMTs (about 33%). However, the associations between prognosis and ALK status need to be validated with additional, larger studies.[3]" https://rarediseases.info.nih.gov/diseases/7146/inflammatory-myofibrobl…

As a moderator on Grace and the wife of a lung cancer survivor the content in the above quote sound very promising for a full recovery. As the grandparent of a young child with IMT I can only imagine the worry and devastation. No doubt there are hard times ahead but there's lots of real hope for a long healthy life without IMT or managed IMT.

I will continue in another post.

Janine

Mayo Clinic has done recent research using ALK inhibitors in IMT, "Inflammatory myofibroblastic tumors often strike in children and young adults. The main form of treatment for patients with an inflammatory myofibroblastic tumor is surgery, but the tumors often reappear in different parts of the body. There is no standard of care for patients with inflammatory myofibroblastic tumors, thus making the discovery of tumor response to ceritinib all the more important. Mayo Clinic investigators are recommending further study of this drug to determine whether it should be approved for individualized treatments." http://newsnetwork.mayoclinic.org/discussion/mayo-clinic-investigators-…

You may want to search the clinical trials database to find what types of clinical research are active for IMT at clinicaltrials.gov

We don't have information specific to children though we do have quite a bit of information (most posted by our members in the forums) about managing side effects from ALK inhibitors. The following thread is dedicated to people taking ALK inhibitors and moderated by a Craig, who takes these drugs and who likely knows as much about these drugs as anyone. I will loop him into your thread. http://cancergrace.org/topic/alk-or-ros1-nsclc-patient-group

I hope your little one moves through this as a bump in the road of an otherwise happy life.

All best,
Janine

Hi Joann,

I'm sorry to hear that crizotinib caused such problems, but it's wonderful news that the scan was clear! We hope that the surgeon is correct and that all future scans are clear as well. Thanks for the update!

JimC
Forum moderator